Giving hope to HIV-positive women

Staff nurse Zaimah Hussin feels immense satisfaction each time she helps a HIV-positive woman cope with her infection. Zaimah says "It all comes from the heart".

By Molly Lim

Malaysian women share their voices with UNICEF to mark the country launch of The State of the World’s Children (SOWC) 2007 report on International Women's Day.

Themed “Women and Children – The Double Dividend of Gender Equality”, the SOWC 2007 examines the discrimination and disempowerment women face throughout their lives – and outlines what must be done to eliminate gender discrimination and empower women and girls.

KOTA BAHRU, March 2007 - Staff nurse Zaimah Hussin's patients know they can reach her on the telephone at all hours, and even on public holidays. The counselling nurse at the government hospital in Kota Bharu, the capital of the north-eastern state of Kelantan, does not only help her HIV/AIDS patients come to terms with their infection, but also assist them in practical matters such as seeking financial help to pay for their medication, dealing with adherence to treatment regime and breaking the news to family members.

Still, she could not quieten her nagging concern at not doing enough for her patients. Many of them are poor, and have to travel from rural areas to seek treatment amidst fears of stigma and discrimination.

Women’s vulnerability

It is, however, the plight of HIV-positive women that worry Zaimah the most. “Women are generally more vulnerable to HIV infection because most lack the knowledge and the ability to protect themselves,” Zaimah explains with concern.

According to Zaimah it is even trickier for married women – whatever their social or economic status – to negotiate for safer sex, even when they know their husbands are engaging in high risk behaviour such as injecting drug use. “In our culture, women always say yes to their husband. He is the king at home,” she says when accounting for the three-fold increase in the number women getting infected with HIV in Malaysia in the last ten years.

“From our survey, we found that women have a low sense of self worth and assertiveness in taking control of their lives. They do not take care of themselves very well. Most come for HIV screening when their husband, or children or they themselves have been admitted to hospital for an AIDS-related illnesses. Some are also detected when they are screened for HIV in antenatal clinics,” stresses Zaimah.

Helping single mothers

When her patients' needs could not be met by the hospital's facilities, Zaimah began seeking help for them from outside. After ten years of tapping on her network of friends informally, Zaimah began mooting the idea of starting a non-governmental organisation to help HIV infected single mothers in Kelantan.

"It seemed a difficult thing to do, but then my son Zahrain agreed to help run the NGO," said the 51-year-old Zaimah who has been in nursing for 29 years.

Zahrain Zulkifli is well acquainted with the hardships of HIV infected single mothers because his mother has always enlisted the family's help. "My mother would refer needy single mothers to our NGO, Prihatin, and we would help them with financial aid. We also set up counselling services for these women because some of them are more comfortable coming to Prihatin than to the government hospital,” Zahrain explains. “We also started income-generating workshops to help single mothers."

Although Prihatin started small, the three-year-old organisation has quickly gained the attention and support of the public and government agencies. They recently moved into a house that was originally built for the district health officer, and now offers shelter to HIV-positive single mothers and their children who have nowhere to go.

A safe environment

"The number of HIV-positive women in Kelantan is one of the highest in the country. About eight out of ten of them are infected by their husbands. They are also often left to deal with their infection, and fend for their children when their husbands passed away. Many are poor, and cannot turn to their family for help," says Zaimah.

Aside from practical aid, the organisation has more importantly given infected women hope. Before Prihatin, many of these women suffer in silence and desperation. At the shelter, they do not only acquire income-generating skills, but also gain and offer support to each other in a safe environment.

"About 70 per cent of single mothers registered with us live below the poverty line. So, there is a dire need for our services. Other states have also looked at what we are doing, and have asked us to help establish Prihatin there," said Zaimah whose initiation into HIV/AIDS work 12 years ago was amidst much fear and paranoia.

Overcoming fear, finding satisfaction

"In 1994, nurses were wearing aprons, gloves and masks when caring for HIV-positive patients. But then, I was sent to Bangkok to work in an AIDS ward where the nurses were not afraid of their patients. I came back, determined to emulate their positive attitude, and started treating my patients without fear," she recalled.

Eight to ten new patients are diagnosed with HIV at the Kota Baru Hospital each week. Zaimah recognises that her counselling is vital in shaping patients' response to their infection. Her calmness and compassion as she explains about the disease and treatment options are often patients' first inkling that their lives are not completely doomed.

"Most patients do not even know that treatment is available; they all think they are going to die. But we tell them that treatment has become affordable with Government subsidy."

As one of the most experienced HIV/AIDS counselling nurses in Malaysia, Zaimah is also actively involved in training other healthcare workers. There is still a shortage of HIV/AIDS counselling nurses in Malaysia, as well as a need to address stigma and discrimination towards HIV-positive patients among healthcare workers.

"I find immense satisfaction in helping my patients. It all comes from the heart," said Zaimah.